Tuesday, June 18, 2013

Bitter Sweet Homecoming...

After what I believe was one of the shortest hospital stays in the history of hospital admissions for us, we came home.

Lucy is not any better than when we brought her through those doors yesterday afternoon. Truth be told, she really isn't going to get any better.

There was nothing too outstanding in Lucy's lab work that indicated to us that there is something treatable going on with our girl. Sadly, what we are seeing in Lucy is as a result of her disease progressing...her body is getting tired.

I could see the love and concern on the faces of so many who know and care for us, who love our girl, as they came by to visit with us today. Lucy is different, but still Lucy, just different. It's so hard to explain, much less try to put into words. But when you see her...you can see exactly what I am unable to describe in words.

The good doc came in this morning to talk to me even thought he wasn't scheduled to be at the hospital today. Lucy cried when she saw him, oddly that made us all feel a little better. He shared with me that this, going through the end of life with our girl, is going to be difficult...confusing...frustrating...painful.

He sees what we are seeing and we share similar feelings on the matter. He told me to take advantage of the time we do have with her, and keep on doing what we do best.

Afterward, he put his arm around my shoulders and asked me, "Do you want to go home?", to which I replied, "yes".

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FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

ENERGY FOR LIFE WALKATHON

UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!